We would be hard pressed to find any illness or disease that has quite the number of exotic and bizarre misnomers used to describe it as does brain injury. These names go from the ridiculous to the absurd. The comatose child in Great Britain is frequently referred to as a "cabbage," while here in the New World we prefer to call it a "persistent vegetative state." Neither has anything to do with a proper diagnosis. Neither tells us where the problem is. Instead, they merely describe one symptom of the problem.
There are quite literally hundreds and hundreds of these names. Often one brain-injured child will have a dozen or more of them stuck to him by the time he arrives at The Institutes. But, as is almost always the case, it turns out he doesn't have a dozen exotic diseases or syndromes; he is just brain-injured.
In the world of brain-injured children there is no group that has been subjected to more libels pretending to be labels than Veras* Kids. For as long as anyone can remember, these particular children have been singled out for special treatment. This has been a dubious honor as the treatment turns out to be neither "special" or "treatment."
*The founder and director of The Institutes for the Achievement of Human Potential of Brazil, Raymundo Veras was the first to treat large numbers of children who were labeled as "Down syndrome" or "Mongoloid". Over the last forty years it has become the tradition at The Institutes to refer to these brain-injured children informally as "Veras children" in honor of Dr. Veras.
At the turn of the century Europeans and Americans called these children Mongoloids (actually "Mongoloid idiots," which tells us a great deal more about the intelligence of the label-makers than the intelligence of the innocent children they were labeling). We can only imagine what Asians and Africans called these children, but my father insists that a Japanese student at The Institutes many years ago said that these children were called "Americanoids," or was it "Americanoid idiots"?
Of course, we are more civilized these days. Now we have syndromes. These charming and highly intelligent children became known as children having "Down syndrome." But they still ended up incarcerated in the exact same institutions where the "Mongoloid idiots" had been sent 50 years earlier. That is, if they survived the nursery of the modern hospital, where they may be left to starve to death if the doctors and parents agree that it is not worth saving them.
If you think this does not happen today, disabuse yourself of that notion. It has only been a few years since someone sent me a newspaper clipping about a hospital in the United States that had allowed a newborn Down Syndrome baby to starve to death.
The article expressed no real sense of outrage. Instead, it focused on one horrified nurse who had quit over the incident and was making all kinds of trouble about it. She said that she thought that the job of a nurse was to save babies, not starve them to death. The newspaper article treated this idea as if it were a very old-fashioned notion indeed.
Now some would no doubt argue that we have come a long way and that these are the exceptions, not the rule. After all, we have wonderful things like the Special Olympics. We have a popular TV show that portrays the life of one such hurt child. The show is kind and surely well-intentioned. Isn't this progress?
But what does the Special Olympics and our well-intentioned TV show really propose?
Does any parent in the United States want their well little son or daughter to grow up and compete in the Special Olympics?
Of course not.
It is not for well people, it is for hurt people. There is no plan, as far as we know, for hurt people to graduate from the Special Olympics and go on to the real Olympics. That is because the event is based on the assumption that "special people" stay "special" for life. It is not a condition from which there is a graduation.
It is a life sentence.
And so we glorify this segregated event that soothes the collective conscience and helps to keep those "special people" special.
What if we started fund-raising for a Special Olympics for children who had cardiac or kidney problems. Wouldn't there be considerable public outcry? Would not common sense dictate that it would be better to raise money to help with heart surgery or a new kidney rather than to create an event in which these children were trouped out and put through some very modified athletic events on the pretense that this was like the real Olympics. We reject the notion that these children be kept separated and taught to live with their disabilities. After all, everyone knows that hearts and kidneys can be fixed.
If we can fight to fix a child's injured heart or kidney, why should we not fight to fix the brain that runs the heart and kidney?
And how about that wonderful television show? Our TV show gives its hurt child a home rather than putting him in one of those terrible institutions for life. Well, that is progress because it results in a much better environment for the child. But he does not live the life of his brothers and sisters. He is separate but, the show would have us believe, equal.
Separate yes, equal no. He will live out his natural life over the garage while his sisters and brothers travel the world and realize their potential and find their destiny.
And finally, in the midst of this modern "warm and cuddly" approach in which we have sanitized the old and ugly labels, how do we explain amniocentesis?
If you want to feel uncomfortable, try making a case for why amniocentesis is such a good idea to a child–any child. If you want to increase your discomfort, try making the same case to the brother or sister of a brain-injured child–any brother or sister of a brain-injured child. And if you really want to test your powers of argument, try explaining the positive aspects of this test with a mother of one of those children who the world calls "Down syndrome"–any mother.
How do we explain that we now have a test whose primary purpose is to spot a little hurt baby and get rid of him at the earliest possible moment?
This kind of thing used to be called "the final solution."
Imagine a world with no more brain-injured children, not because we eliminated them but because we fixed them. What a wonderful world that would be.
The Institutes is dedicated to helping brain-injured children whom the world calls "Down syndrome" and whom we call "Veras kids."
From the instant of conception these children exist in a world that threatens their life, their liberty, and their pursuit of happiness. Too often their lives have been wasted living out the self-fulfilling prophecy that they will not measure up to their peers.
These children are much more capable and productive than their parents are led to believe is possible. Many of them that carry out The Institutes program with diligence become completely well.
Their parents were told the same thing that all parents of Veras kids are told. Some of these mothers had an amniocentesis, but when they learned they were going to have a hurt baby they rolled up their sleeves and started fighting for their babies right to a real life. They got on the waiting list at The Institutes months or years before they would have done. (Now that is good reason to have an amniocentesis.)
These parents could not believe that their bright, beautiful babies did not deserve a fighting chance. Instead of their children being spotted at the moment of birth and condemned to a life in which they are treated differently from all other children, these babies were born into an environment in which their intelligence and potential were respected.
And finally, for those who wonder how we can treat children with chromosomal abnormalities and expect them to get better, we would direct them to the results–they do get better. And what is more, in 40 years we have never changed a single gene.
We probably never will.
We just change brain cells.
And for Veras kids the world over, it's often enough.
